I keep this blog in part to easily update family, friends, and other JA parents (and any other interested persons!) on how Anna is doing on her journey with Juvenile Arthritis.
Since Anna was first diagnosed in 1999, the terminology has changed. I believe that now children are diagnosed with Juvenile Arthritis, or Juvenile Iodiopathic Arthritis, et. al. However, I created this blog a long time ago, when people referred the disease as Juvenile Rheumatoid Arthritis. Hence the "JRA."

Sunday, October 25, 2015

Anna continues to make post-surgery progress. She tried eating some Chex Mix last week, and decided that she is now ready to eat chips and snacks again. Today she asked if we could eat at Texas Roadhouse---her first attempt at eating steak since her surgery. She can do it, as long as she cuts it into tiny pieces and takes her time. That's the key to eating for her (and I believe we as a family have all slowed down our eating a bit, so that Anna is not left eating alone at the end of a meal---and that's a good habit). I remember about two months ago, the orthodontist told Anna that by October, she would feel almost normal again, and be able to eat almost all of her normal foods. He was right! Patience and perseverance. That's what it took.

The only medical-related appointment for Anna over the past few weeks was her Remicade infusion on Friday afternoon. We had scheduled it so that Anna could participate in a field trip to the Carlisle Army War College that day. She had a great time and had much to tell me and show me (from pictures from her phone) and exclaim about when I picked her up. It was a beautiful day on Friday for a field trip, and the students were outside all day in the wind, touring and walking and visiting the interesting outdoor, interactive museum on the grounds. On the 20-mile drive to Hershey for her Remicade treatment, she became increasingly subdued, prompting me to ask her several times if she was doing okay. She was just tired and wiped out. And then a few hours of Remicade dripping into her body increased her tiredness. Once we arrived home at 8:30 p.m., she went straight to bed and slept for 12 hours.

This is the reality of Remicade for Anna. Whenever she has a long day (even though it may be filled with fun and interesting moments), her body needs adequate time to recover---usually a "day for a day" as I've noticed. We take the bad with the good. The Remicade infusions allow Anna to have the vision to fully enjoy field trips and other pleasures. So I'm thankful for Remicade to some degree. I get concerned as a mom when she is abnormally quiet and subdued. But I'm learning to accept that and know that "this, too, shall pass---with adequate rest." I'm a realist.

We want to thank everyone who prays for Anna and for us. We know that there are times when the Lord is carrying us through the challenging times and giving us peace and sometimes working to adjust our attitudes. We have so much to be grateful for---like the fact that Remicade even exists and is helping to control Anna's uveitis. And for the insurance that covers the cost of the Remicade (I was astonished when I saw a recent insurance statement which had the cost listed, and it humbled me to know that this cost has been covered by Anna's two insurances---I know I cannot take that for granted.)

Sunday, October 11, 2015

We had a very busy week with a trip to Lancaster (follow-up on the surgery and orthodontics) and a trip to Hershey, to the retina specialist (besides school for Anna, work for me, a football game for Anna, and her last high school homecoming dance). The orthodontist at the Lancaster Cleft Palate Clinic continues to be very pleased with the healing process from the reconstruction surgery. The retina specialist gave us very good
news that Anna's eyes remain clear of inflammation. Because Anna has been back on her medication regimen for just six weeks, the retina specialist does not want to rush to make any changes. We'll continue with one Pred Forte eye drop daily and Prolensa eye drops twice daily, plus the weekly Methotrexate and then Remicade every four weeks. When Anna sees the ophthalmologist in early November, we may be able to stop the Pred Forte eye drop at that point. The first priority is to get her off the steroid drop.

I sometimes think back to 2014, when Anna's uveitis flared so badly because she failed Humira after five years. (It was this time last year that we flew up to Boston to have a consultation appointment with Dr. Foster regarding Anna's prolonged eye inflammation and resulting macular edema.) It's very likely that Anna's system built up antibodies against Humira at the end of 2013, and there's no guarantee that this will not happen with other biologics over time; in fact, it is likely. However, we will take things as they come and be thankful today that her eyes and joints are quiet and that she continues to heal from surgery. She did find out that her face is still rather tender when she went to rub foundation onto her skin in preparation for homecoming (she doesn't usually wear much makeup). She still has one area of numbness, but most of the rest of the numbness has subsided. She tried biting into a Pita cracker recently, but she found that to be difficult, and decided that crackers will need to wait. She WAS able to bite into a soft meatball sub this week, and she attempted to eat chips. That took a while, but she did it! Anna has also been making progress with her bassoon. She returned to her private lessons this past week, and for now, she practices for shorter periods of time to build up her strength and stamina.

Even though the reconstruction surgery was a major circumstance in our lives this year, it feels like we're on the downhill trek of a very tall mountain. But life is full of mountains and valleys---of hard times and circumstances and easier times when we can relax and take a breath. For now, we are appreciating some time to breathe a little easier, to enjoy the time when we are not needing to process so much new medical information and weighing the opinions of different specialists. A time to enjoy some of the normal things of life---like autumn breezes and homecoming football games and times around a fire pit with friends.

I've been working on knowing God's Word better, and even though my brain is older and memorizing is more difficult than it used to be, I've been working on that, too, as various verses and passages speak to my heart. Over the past few months, I've been working on memorizing one passage in particular. This is encouragement for all aspects of life, whether it's a chronic condition, or other difficult times (we all deal with hardship and messes in life!) Whatever your circumstances, remember this:

"Be on guard.
Stand firm in the faith.
Be courageous.
Be strong.
And do everything with love."
1 Corinthians 16:13-14

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